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Turning the tide for rare disease
Turning the tide for rare disease
Riding the wave of medical research to find a cure for Ellie
By admin
6 April 2022
Rare insights
Medics4RareDiseases joins forces with Bionical Emas to launch new online training
By admin
5 April 2022
Patient voice
Redefine: Max Feinstein’s concept album inspired by his life with haemophilia
By admin
4 April 2022
Rare insights
National charity MPS Society encourages the public to spread awareness about rare genetic disease
By admin
4 April 2022
RARE News
Global non-profit CureDuchenne announces futures national conference for the Duchenne muscular dystrophy community to be held May 27–29
By admin
1 April 2022
Patient voice
MNGIE: Verity Grainger’s mission to raise funds for a life-saving therapy
By admin
30 March 2022
RARE News
Mental health and care navigation top list of needs for people living with neurodegenerative diseases at Adira Foundation congress
By admin
28 March 2022
Turning the tide for rare disease
Time for action
By admin
28 March 2022
Turning the tide for rare disease
The Global Genes Rare Disease Equity, Diversity and Inclusion Report: the glimmers of hope
By admin
23 March 2022
Turning the tide for rare disease
Libmeldy gene therapy offers a lifeline to children with leukodystrophy and gives hope to the rare disease community
By admin
23 March 2022
RARE News
Mississippi becomes first state in 2022 to sign newborn screening legislation
By admin
17 March 2022
Turning the tide for rare disease
Turning the tide for adult polyglucosan body disease (APBD)
By admin
16 March 2022
Turning the tide for rare disease
The Global Genes Rare Disease Diversity, Equity and Inclusion Report: the challenges
By admin
16 March 2022
Turning the tide for rare disease
The healing power of storytelling
By admin
14 March 2022
Turning the tide for rare disease
Gillian Jackson: bringing positive energy and information to the online BBS community
By admin
11 March 2022
RARE News
New research released with recommendations for improving psychological support at the point of a rare disease diagnosis
By admin
10 March 2022
Charity & advocacy
The Vascular Birthmarks Foundation, Dr. Giacomo Colletti, Laserplast, and Candela collaborate to provide pro bono laser treatments
By admin
10 March 2022
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